Monday, May 22, 2023

Day + 74 Dr. K


Dr. K is back from his trip visiting his kids and running a 10K! (He literally got first place in his age division ... he literally is the best doctor ever!) 

I got to see my buddy Adrian who is kicking Leukemia's butt. We are going to get together and play basketball at the park by my house and eat ice cream soon.

Dr. K said my face is as pink as my pants ... because my hemoglobin is SO high at 13. It's a rally weird feeling to process being cured, and not needing blood transfusions. My retic is 2.7 - WILD that it is so high and holding steady after it being at zero for the past 20 years.

I'm on my way to no more ports or pokes ... someone pinch me, thank you God for this opportunity to be healed! I'm so thankful!!

Monday, May 15, 2023

Day + 67


I had a good appointment today, Nicholette the NP brought me and Adrian a Cherry Limeade slushi ... perfect because it's getting hot in Phoenix!

HGB 13.2

Retic 2.8

I'm actually doing it! I'm making my own rd blood cells for the first time in 20 years. Well, technically they are Maddy's cells .... but still! How wild is that?! This whole BMT process will be so life changing for me especially next year. I can't wait to go on a special trip with my family and my dad (for his 50th birthday) and my 1 year post BMT transplant CELL-ebration.

Thank you to everyone who has donated to help us gt to Europe!!! I am so looking forward to this trip and will be planning it out for the next year!

Friday, May 12, 2023

Bald Beauties Project

 I received the BALD BEAUTIES PROJECT photos from the volunteer photographer Stephe, they turned out great! I felt so special and beautiful during the process. Thank you so much Maya and Stephe for a fun evening photo shoot at Sanctuary Cove, it was the perfect spot!

Monday, May 8, 2023

Day + 60 Adrian is Doing Good!


My buddy Adrian is doing good too - he is recovering from his stem cell transplant battling leukemia. His family Brough me a Dutch Bros drink - thanks guys! 

I haven't seen Dr. Hanmode since before my transplant, so he's really happy with my progress, so Nicholette my NP. 

Since it's National Nurses Week - We went to Dutch Bros for my POTC nurses at Cardon Children's Medical Center ... 

Got spoil these nurses while we can!

It was my first time "OUT" getting something which was fun, just to be outside. The things we sometimes take for granted. Thank you Dutch Bros!

I went to show Adrian the Big Outside ... 

It's an outdoor / but indoor play area for kids in the hospital, how fun! I think I helped somehow to raise money for that. Go Cardon's!!! Helping kids to have fun despite what they are going through, I'm here for that! 

Thursday, May 4, 2023

Day + 56 Trip to Tucson


We made it to Tucson by 10:00 am for Dr. Katsanis' Fitness Test, labs, and a monthly med through the port. It's so good to be back and see all my Tucson peeps!

NP Kyleigh wearing a Mia's Making Marrow Shirt ... awwww!!!! We love you Kyleigh. 

Up next is the fitness test study with awesome people that work in Dr. K's lab. I have done this fitness test the day I was admitted, 30 days after when I discharged, and then again just now. I'll do it again in one month, and then 3 months after that. Super cool. Also, thank you Varshini for my TS bracelet you made me! That was so thoughtful and kind, I love it! Also, thank you to Andres and Geovana for always being so kind when we do this test. They are working together to examine the effects of exercise on immune responses in pediatric and adolescent patients post bone marrow transplant. Super interesting, they share a lab with someone who is studying the effects of that similar to astronaughts in space. Elon & Kimball Musk, we need you!! Please help them with some funding because not only Dr. Katsanis curing patients like me, they are researching some really cool stuff, plus I want to see the lab and it would be so cool if we could tour it together! 

One of the fitness things I do is see how my grip strength is ... during transplant it was NOT strong. But I'm getting better every time.

Ohhhhhhh Alyssa the port ... for the fitness test you need a lot of blood for labs, besides the labs that my doctor needs, so she got a bit clogged. The nurse put alteplase on it and it sat for an hour, then it worked. But while waiting, we went up to D6W to say hi to the best nurses ever!

My Rachel wearing a Mia's Making Marrow shirt ... so cute!

MEGAN! She's got her shirt on too, ugh these girls love me and it shows. I am so thankful they were involved in my healing to get better. They are gems. But they actually have to work ... haha, like help save lives, so back down to the 2nd floor clinic to get pentamidine (once a month med for warding off a  pneumonia that transplant patients can get.) 

Yay, Alyssa the port is working, go Alyssa. This med is just an hour ... so that was quick. Then I went back up to D6W to say good bye to the BMT nurses.

We LOVE you guys!! How nice to be able to see them and give them a squeeze!

By this time it was just after 4:00 pm ... perfect timing because we have a photo shoot to get to. I was approved to do the BALD BEAUTIES PROJECT and I'm so excited. I picked Sanctuary Cove just off the freeway on the way home, which ended up working out great. Please just give them a look and read the story behind it, and if you feel led, give a donation, even a small amount.

During my transplant stay, this display of Bald Beauties Project is right by the door, and one day my photo will be up there. Then my nurses can see my beautiful face everyday, haha!!

A quick BTS (behind the scenes) ... 

Can't wait to see the actual photos ... !! Stay tuned ...

Monday, May 1, 2023

Day + 53 Monday Doctor Appointment


It's Monday ... time to check labs and see how my blood levels are doing. 

It's a wild thought to think I won't have to do this so much by next year. I can actually live a normal life and get on with ... my life. That is just surreal to me.

1               3   

My hemoglobin is 13.1    .....     what is this?!? Never has my hgb been this high on my OWN before. My mom tried to donate platelets last week but couldn't because her hemoglobin was only 12.1 (you have to be 12.5 to donate) so I'm higher than her?!?! Hahahhhahhahahhhhaa ... what.

My platelets are basically back to normal at 180 ... they were the last cells to appear and grow. I had about maybe 20ish or so platelet infusions back in the hospital, but now my body is producing them just fine by itself. YAY!

My retic is coming down now and leveling off ... yay. It was 4. something. My whole life this number has been zero ... since I never have made my own red blood cells before. GO Maddy's cells. Wow, she volunteered to give me this new life so I could live without blood transfusions. Thank you Maddy.

Saturday, April 29, 2023

Day + 51 Adrian is Home!


My buddy Adrian got to go home from the hospital / Ronald McDonald House Tucson yesterday! YAY! He is doing so much better. Cancer sucks. 

See you at the Mesa clinic on Monday! We will race you ... haha. Fun fact, Adrian and his family lives in our old neighborhood, so we knew exactly where to go to being by his house and say hello!
You got this #AdrianStrong

Saturday, April 22, 2023

Day + 44


It's been exactly 3 weeks since my last blood transfusion that was given to me on April 1st during my BMT. ( I remember April 1st all too well because that's when I had a TRALI - a reaction to a blood transfusion that attacked my lungs, a year ago, on April 1st 2022.) 

Normally I would have gotten a blood transfusion probably yesterday, I would have been pale, tired, and lethargic, with a high heart rate from doing ... absolutely nothing. 

Today, I'm doing quite well. I still get a little nauseas in the mornings, sometimes, I've never had chemo or radiation, or any of that before, so that's to be expected. But to not be feeling, 'low' .... there are no words to describe it. Am I really free of the hospital life after 20 years with DBA???!?!?!?

Everybody should know by now that my little sister Maddy volunteered to donate her stem cells to me. All those years, and I had my cure right by my side the whole time.

I had a bone marrow aspiration back in Tucson the day I was discharged from the hospital while I stayed at the Ronald McDonald House Charities Tucson, and the results show: I am 97.53% (+5) so basically 100% engrafted as ... MADDY! What a real life superhero she is. Go Maddy's cells GO!

She saved my life, along with all the blood donors who have kept me alive for the past 20 years. How do you say thank you enough?!?!?!?! I guess to live a long and fabulous life!!

Monday, April 17, 2023

Day + 39 Great Doc. Appt.

I had a great Mesa clinic appointment at Banner Children's with Doctor Katsanis today. Did you know, Dr. K drives up from Tucson once or twice a month to visit all his Greater Phoenix Area patients, how nice is that?! Good thing he actually drives a Tesla (thanks Elon Musk) to get him back and forth without paying for gas! Nice. 

My labs are UP again! This is so crazy, my hemoglobin went up from 9.6 to 10.2!!! I'm literally making my own red blood cells for the first time in 20 years, pinch me. Last week my retic was 13.3 and it was 18 something today - WHAT?! Go Maddy's cells go. My retic has been m.i.a and to have it be so high on it's own, there are no words. My parents are so used to it being zero ... they get so happy/emotional seeing it so high. My platelets were even higher at 63, they are the last cells to appear after a bone marrow transplant, and they are so important. Our family didn't realize exactly how needed they are simply to be alive, until I desperately needed them. I needed them everyday for almost 2 weeks when I had ZERO counts after the radiation and chemotherapy. 

Since I had such a good doctor appointment, we canceled my Thursday clinic visit and I'll just be going once a week now. This is SO weird. But so cool at the same time, and I haven't needed a blood transfusion since April 1st. How ironic that last year on April 1st, I had  a TRALI (transfusion related acute lung injury)  and almost died. April first is no joke to me, haha.

There are still a few shirts left from my Mia's Making Marrow Campaign with the proceeds going to Doctor Katasnis' Steele Children's Research. If you would like to just make a donation to him, please feel free, but make sure you say FOR: pediatric hem / oncology division. I would be so thankful!!! Nothing would make me happier than helping Dr. K. receive money to help in research with his lab and curing kids via Haploidentical Transplants. He cured me after 20 years of living off of others peoples blood, how could I ever thank him enough?! 

Monday, April 10, 2023

Day + 32 First Clinic Appt. Back in Mesa


My first clinic appointment back in Mesa, AZ at Cardon Children's Medical Center, or rather Banner Specialists. It's so surreal to be back home and on the other side of transplant. 

Valencia came over from POTC to give me a hug and say hello!

So great to see Nicholette my NP that I've had for over 10 years.

She takes such good care of me, and always says and does what's best for me. 

So last Friday in the Tucson clinic, my hub was 8.1 TODAY it's 8.3

RETIC - last wek 5.5 TODAY it's 9.7 

What an Easter Miracle ... thank you God so much! I am only way to being cured. Amen!

Friday, April 7, 2023

Day + 29 Doctor Katsanis Says I Can Go Home!


Me and the brilliant Doctor Katsanis who has cured me of Diamond Blackfan Anemia that I've struggled with for the past 20 years of my life. 

Wednesday, April 5, 2023

Day + 27 Clinic Appt.


We made it to the clinic on the 2nd floor of the hospital, it's like a doctor's office and POTC all in one spot making it super convenient to be seen, and if you need anything like platelets, you can just get them there.

Look who came in on her day off ... to spoil Mia, Nurse Megan. We didn't get to see her when Mia got discharged so it was so nice to give her a squeeze. Thank you for the T-Swift sunglasses and HELLO, Taylor Swift Folklore Album!

Mia got platelets while in the clinic and had a nice little Benadryl nap. 

We swing by the 6th floor D6W to say to Adrian and anyone who was working ... keep going Adrian! You are getting there <3 Stay strong, I'll probably come back and say hi on Friday!

Yay for getting to see Rachel! It feels like we haven't seen you in so long, but it only been a few days, still way too long to not see you!

Tuesday, April 4, 2023

Day + 26 The Plan


The Plan is: to discharge Mia from the hospital. They gave Mia platelets at 2:00 am, redo labs ... platelets came back low again, they went only from 17 to 19 and the surgeon wanted more platelets to be able to remove the Hickman line so she could clot just in case of bleeding. Mia ended up with the same surgeon who placed the line, Dr. Leichty. He is SO great, we were so happy it ended up being him. 

Mia did great with the line removal, Thanks Dr. L. and the NP did a bone marrow biopsy at the same time. Multi tasking, love it! Mia ended up getting 3 bags of platelets in 1 day ... can we just thank platelet donors?!?! We actually had to wait in the morning because the Red Cross hadn't delivered them and the hospital was out. Thankfully they to the hospital quickly though. That could end up being really scary in a dire situation.

Somebody pinch us!! Is this really happening? We come to the hospital for 5 weeks, and leaving cured? Sheesh ... all DBA patients should come on over to Diamond Children's in Tucson for this opportunity to be cured using a Haploidentical protocol with a HALF match. Mia's relic today ... drumroll ... 2.4!!! WHAT?!?!?! Happy tears. Never in 20 years has it ever even registered above .5 ever, so for it to be that high is amazing. 

Mia is sad to leave her buddy Adrian in the hospital though, but he will be the next one to bust out of here cured!!! Stay strong Adrian ... we are praying for you and your family!